Erosive oral lichen planus

@zinnia55 I do. I wrote here about recently having a tongue biopsy. A scary thing and was my 2nd of 3 biopsies this year. Thank god Breast and Tongue were negative. 3rd 2 weeks ago was biopsy for basal cell which could be more extensive MOHs surgery in April.

You know how there gets to be sooo much going on medically that it gets easier to ignore some of it? It was the oral medicine person who told me I needed to get the thing on my face checked. I have the erosive type. I've been on LDN for a long time (with some breaks for surgery/pain meds.) I rarely have a day without a sore somewhere in my mouth. I am having all my top teeth removed next week, this condition and a few other autoimmune issues (CRPS) have taken their toll. I've wondered tho if having fewer fillings will help. I'm very allergic to nickel, who knows how much is in old fillings.

So you are having issues. I want to suggest - if you have a dairy allergy, and whey is a filler being used in manufacturing, or by the compounding pharmacy you use, that can cause your belly issues.

Or the same with gluten. Gluten is also used as a filler.

Worth checking out. Sadly, because what we get for generics every month changes (whatever is cheapest for the pharmacy's middle man) we can't control month to month what filler is used. I can talk your ear off about the issues with generics, but finding a pharmacy that uses high quality product (I think cold pressed?? - or not, I forget) is key. When I find a manufacturer with the right filler, I have ny dr put that manufacturing company as a must on the script. Then I shop around for the local pharmacy that can get that manufacturer. There are some I just avoid or do much research on. Teva and Sun manufacturing (in india) plants are usually not good depending on the generic.

This is what happens when we get a different say blood pressure meds and every month its a different manufacturer. Our blood pressure can be overtreated one month and undertreated the next.

Like I said, don't get me started on what we don't kniw about our generic meds.

Check whey or gluten filler if you have a sensitivity? I've not seen many with belly issues with LDN - esp at such a low dose? Glad you have an informed doc.
My best

@bestoflife I too have very red gums, they look spongy to me on the top set with red and white, redder and swollen on the bottom. Thank god when I smile I don't see my gums. They are always tender and if they get nicked they will bleed. That was how I realized something was wrong, originally I bled a lot. Then the white striations came, and then the sores in the bottom mucous or on the outside gum of the tooth. White puss looking things. Brushing teeth OMG that was awful.
Since the Dentist didn't know, they said go to your Doctor, The doctor did blood work and sent me to the ENT. That Dr did a buccal swab and gave me the Steroid Dental Paste.
After two weeks of that the sores healed, less white striations, and it's calmed down a lot. I found Toms Toothpaste with coconut oil. At least not as irritating to brush now. I avoid citrus , spicey foods, abrasive foods. No chips or crunchy. I also drink less alcohol, but one day at Christmas I had a few glasses of wine and that wasn't good. It flared again. I too wonder if the inside tissue is thicker/swollen... feels like it. Hoping it stays at bay with no open sores, like it is now but who knows.. @zinnia55 it's sad that the doctor's don't care enough to find a solution. I feel that is what's lacking in our medical system with so many specialist. Hard to find that one that will dig until they've figured it out. If I have another flare up like I lived will most of the summer I will ask about this mouthwash. Both doctors put Lichen Planus in their reports but neither has actually said those words to me personally. I'll see my Dr in February and I am going armed with information to talk about. I will consider a biopsy at some point too. All best to you all.

@kmm29 Good Morning! I have been treated for about 8 years I think. At the time I was diagnosed I had erosive lichen planus. My gums were so very red-I was under a great deal of stress at work and I think that was the reason my immune system went wonky!! Anyway, my dentist was on top of things-sent me to a specialist who is a dermatologist as well as a dentist and also to an another oral specialist. The only way to diagnosis lichen planus is with biopsy. I use Clobetasol gel on my gums 3x week, a tacrolimus solution swish also 3x week. For the most part my symptoms have been kept under control but stress and alcohol seem to get symptoms beginning again. It’s hard to restrict things I enjoy so I really try moderation. I have to say that I am “lucky” that my symptoms are generally pain free even though there are blisters etc.
I wish you the best and hope that your dr is helpful! What frightens me is that lichen planus can lead to oral cancer.

@microgirl It frightens me to my core also! As for stress... I don't feel stressed although when this all started I was under a bit, I was dealing with a freakishly bad sciatica situation I had never had and using a lot of Motrin that was coming so close to a year long trip we had planned. Thank God for the chiropractor that took me in.
I was doing pretty well for 2-3 weeks after using my triamcinolone paste for the first time for 2 wks, no blisters have come back.
This week the gums are becoming red and inflamed again with occasional blood while brushing, so I am using the paste again.
I have not been back to the ENT since they did the buccal swab and prescribed this stuff, she suspects OLP as does my doctor. So I can see that happening soon as I will run out of the paste and then what, plus I want to discuss the biopsy as you said.
I really like the idea of a rinse. This stuff really ruins the taste of food though, but I suspect it all will. I'm in the beginning of my journey here and cheers to a stress free year!
Best of luck !